Hello, I am a 47 year old female that was diagnosed with Extramammary Paget's disease last month. I had a partial vulvectomy and it is taking awhile to heal. I was wondering if anyone had any good tips on healing. I wanted Sumi to know that I also went to Dr. G. Sutton in Indianapolis and have been pleased with him so far. Although he went on vacation right after my surgery and I have not seen him again. I was wondering if Dr. Sutton did followup testing on you. So far his assistants did not feel it was necessary.

Was your surgery MOHS? My MOHS perianal surgery took 4 months to heal. I'm sure it depends on where and how much tissue was removed. All the lit. says this EMPD skin cancer often returns. The cells are like a crab. It digs down and then appears outside of the incision line, I have read that its important to have slides of the tissue removed read by a patholigist to make sure all of the cancer cells have been removed. Don't rely on assistants guessing if you need check ups. Get someone who is familiar with the research make recommendations as to how often you should be check for re-accurances. I have check ups every 6 months now. If anything looks questionable a biopsy is needed. My slides are review by a path specialist in a university setting. I was told if my check ups show negative results, we can wait longer inbetween checkups. I have my GYN do the checkups. She can use the colpascope to examine the area. Did you have all other areas of suspeced cancers checked out. i.e. bladder, vagina, rectum, colon, etc. This cancer can be a second site of simular tissue. Pain management is a very big issue to us Pagets patients. The area is prone to infection as well as a LOT of pain. That skin has a lot of nerve endings. :^( Its important for everyone to be followed by a doctor until its completly held. Several of us think this condition should be very closely monitored by home health or cared for in a hospital setting. How do each of you feel about this last statement??? The doctor I went to at M.D. Anderson is no longer there. He as a MOHS specialist and got several cases of Pagets a year. Its upsetting that there is not a "recommended protocal that all surgeons use. People, our treatment should not be a guessing game. There are a few studies that show different results. We want the treatment that gives us the best chance of no re-occurances. How many of you have had more that one surgery or treatment? How far apart were they? What was your treatment? What is the longest time you have not had any re-occurance? Is any research collecting the results of EMPD pts in the US??

Dianekm, Glad you had successful surgery. Dr Sutton will have your pathology report and will give you instructions on your course of action. I am confident that he did the same surgery for you that he did for me, where he injects you with a dye and takes you in a dark room and draws around the area that lights up. I had clean margins and he said that was rare. As far as healing, it does take a long time to heal. I found that sitting on ice packswas helpful, I wore loose fitting pants (like the travel knit pants)and used our jaccuzi bath tub. Hang in there, it takes a long time for it to fully heal. The last surgery I had was a very large area and the area that took the longest was the Perineum area. I was close to having skin grafts To answer EMPD, I had two surgeries, not because it came back, but because my first doctor did not remove all the EMPD. I have not had an occurance since my last surgery 2.5 years ago. I am examined by my gyn and Dr Sutton annually.